Negative Nellies

As much as I don’t want to spend much time at all focusing on the negatives of this experience, its time to talk about the “Negative Nellies”.  That way if someone finds this one day and is considering making a living donation, they haven’t been mislead into thinking that the feedback I have received is all sunshine and lollipops.

When you decide to look into donating a kidney and you start to tell people that, you have to be ready for the feedback good and bad. People love to give their opinions and many assume that you are telling them your plans because you are uncertain and in need of advice. Many assume you are asking for their approval.  While this almost always wasn’t the case for me, I still had to take a deep breath and deal with whatever reactions came my way.

When people are saying something positive, the likelihood of it “coming out the wrong way” is pretty low. But if people are concerned, emotional or down right against an idea, there is a very good chance they won’t choose their words carefully or curb their “tone”.  Here are some examples of some of the concerned, emotional and negative feedback I have received so far (keep in mind it was a big deal for me to tell some people and I was really putting myself out there when I did)

On the subject of my donation idea in general

“Isn’t donating blood enough?”

“This could be career limiting”

“That’s just a stupid idea”

“This is going to turn into some kind of Seven Pounds thing isn’t it and you are going to end up in a bathtub full of ice with a jellyfish”

“Do you think you have magic kidneys?”

“I think you just need a hobby”

On the subject of the fact I have thought it through/researched my decision

“I think you must have misread your research.  The risks of this sort of thing are very high”

“I don’t think you've really thought this through.  If you had you wouldn't be thinking about it”

“Just because someone donates an organ on Grey’s Anatomy Lauren doesn't mean you should do it.  You do understand that is a TV show right?”

On “Donating to a Stranger”:

“Who are you giving it to?...No I mean who....A stranger?  What do you mean a stranger? Why would you want to help a stranger?”

“Well that’s just selfish.  What if someone in your family needs a kidney down the road? You won’t be able to help them”

There has also been a small little group of people who aren’t negative-but they aren’t positive either.  It’s like what I told them went into a giant black hole never to be spoken of again.  These are people I interact with regularly and they don’t talk about it, ask about it and they never made a single comment when I told them about it.  They glossed over the news and in doing so have created a bit of the elephant in the room.

I know from previous life experience that life doesn't come with a manual. Our initial reactions to things are natural and we can’t always react "appropriately" to news that surprises us.  I guess what I don’t get is the aftermath-why so many of these comments are made after they've had time to digest and choose their words more carefully or why people don’t come back after they have reflected and try to “fix” any damage they may have caused.  I’m not referring to strangers here-these are people I know and consider myself to be close with.

In the end if any good can come from this relatively small ‘bad” part of what has been an overall positive experience, I would like to offer a couple of suggestions.  If someone is telling you of a major life decision they’ve made, organ donation or not, just listen.  Be honest and genuine but be sensitive.  Try to choose your words carefully and try not to leave them hanging (say SOMETHING!).You don’t have to agree with their decision but at the same time there is no good that can come out of making them feel bad about it.

And that's all the time I am going to dedicate to Negative Nellies.

What Causes Kidney Disease

I wanted to understand a little more about "who" I would be helping and what was wrong with their kidneys that got them on the transplant list. Outside of the personal stories people have shared with me, I wasn't sure what the common causes of kidney disease were.  So I made a date with Google and here are what I would say are the "Top 8" causes of Kidney disease.

1. Type 1 and type 2 diabetes can cause a condition called diabetic nephropathy.  That’s the same thing with diabetes that attacks people’s vision, circulation, ability to heal etc. and the kidneys are highly vulnerable because of the filtration work they do. It is the leading cause of kidney disease in the North America, responsible for 1/3 of the people on dialysis.
2. High blood pressure (hypertension), if not controlled, can damage the kidneys over time. The thing with high blood pressure is that so many people aren’t aware they have it so the damage is being done even though they “feel fine”. That's why it's the "silent killer".  If I do end up donating, this is why it will be imperative for me to see a doctor every year to monitor my blood pressure as there will only be one kidney left-it would fail a lot faster than two if high blood pressure went undetected for long.
3. Glomerulonephritis (Wowsers-that’s a mouthful) is the inflammation and damage of the filtration system of the kidneys, which can cause kidney failure. Complications from infections (like bladder or kidney infections) and lupus are among the causes. Another way of putting this is "Infections Gone Wild".
4. Polycystic kidney disease (PKD) is an example of a hereditary cause of chronic kidney disease wherein both kidneys have multiple cysts.It causes you to have enlarged kidneys as well which can cause trouble for your neighbouring organs like the spleen. This is what often puts children or young adults on the transplant list. For most if not all of these people its not a question as to if they'll need a transplant, but when (although in recent years many via special diets and medical attention have made it well past 30 without going into kidney failure).
5. Use of analgesics such as acetaminophen (Tylenol) and ibuprofen (Motrin, Advil) regularly over long durations of time can cause analgesic nephropathy, another cause of kidney disease. Certain other medications can also damage the kidneys. I kind of wonder how many people are going to be hit with this in the next 20-30 years as these drugs have been pretty “regular” things in our lives.
6. Clogging and hardening of the arteries (atherosclerosis) leading to the kidneys causes a condition called ischemic nephropathy, which is another cause of progressive kidney damage. This is the same thing that often leads to heart attack and stroke.
7. Obstruction of the flow of urine by stones, an enlarged prostate, strictures (narrowings), or cancers may also cause kidney disease.
8. The less “common” causes (but still relevant) of chronic kidney disease include HIV infection, sickle cell disease, heroin abuse, amyloidosis, chronic kidney infections, and certain cancers.

I found a cool page that shares a handful of people's stories, as told by them (voice not video) and their experiences with living with kidney disease.  I listened to them all and I have to say you'd be hard pressed not to relate to at least one of them.  They are all just regular people trying to have regular lives with kidney disease hanging over their heads.

The Good People

I promised when I started this blog that not only would it follow my emotional journey through this experience but hopefully it would also shed some light into the experiences that are "part" of the process.  So over my next few blogs I'd like to talk about my people experiences so far, good and bad.  That way if people who come across my story ever are considering doing the same thing, they get a snapshot of the pluses and minus of this process.  Today let's talk about the good.
I wrote in the beginning about my fears and nerves when it came to telling key people in my life about my decision.  As much as I have always seen myself as a very independent "lone wolf" kind of a person, obviously their opinions mattered greatly to me, hence my hesitation in letting them in on the secret.
Eventually the key people were all told and I felt a little more confident about my choice.  So I told a few more people. I'm still being selective in who I tell when for a few reasons.  The first is that you need time to have a decent conversation about it-its not something that lends itself well to elevator conversations.  And secondly I am still trying to get past my own shyness and unease with attention being on anything related to me.  As a result of this I think I personally have told about 15 people directly and a handful more have been made aware via Facebook.
I have to say I am absolutely overwhelmed by how much support I have been shown by so many people.  People have gone out of their way to share very personal stories about how kidney disease has impacted people in their lives. I've had more than one person (!!) tell me about how they themselves or their spouse have just one kidney and they are very healthy. There have been emails sent from family members and friends that have been filled with so much love and support I get teary reading them. I've also had at least a couple of friends share my story with their other friends via social media to help generate awareness and the need for more living donors. There was the crazy test Doctor and ultrasound tech who told me I was doing a good thing and wished me well so enthusiastically.  I had an amazing post dedicated to my story by Robin, a friend I haven't chatted with in over 2 years, on her blog. There have been offers from people willing to drive me to work after the surgery which isn't even a sure thing yet (I can't drive for a month). I have to say it kind of feels good as the "lone wolf" to turn around and see that I have such a wonderfully strong and supportive "pack" behind me backing me up.
Regardless of how this journey moves forward, I wanted to make sure I captured and paid tribute to all of you who have contacted me directly or even just supported in spirit by reading and following my progress.While there have been a few "negative nellies" which we'll talk about another day, the kindness I have received from people has been pretty awesome. 

Thank you so much.